Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Tag Archives: Ehler’s Danlos

At some point, perhaps, I will learn. I will finally, for the last time, put myself and my finances through the process of having something investigated only to emerge from that process poorer, more frustrated, and with the answer I already had: I have Ehler’s Danlos Syndrome, and I will never feel “good” again in my life.

I spent $139.00 clams to get the MRI of my shoulder last week. That’s a nice pair of boots, or almost halfway to a pair of BedStu boots. (I KNOW RIGHT?) I had to go in to work late, and the tech was running late, and someone else there wanted to talk to me about my stalker sibling’s made up medical problems (because they are WAY more interesting than real problems). The tech assured me the doctor’s office would have the results the next day.

The short version of how obtaining the results went can be summed up thusly: PCP’s office decided not to answer their phones all day the next day, PCP was out of town, I got the results Friday via a text of the report he got faxed to him. There was a lot of anger, frustration, tears and cursing during this process.

The results? AC arthrosis, which is the same as arthritis except the word arthritis indicates inflammatory change and arthrosis is degenerative change without an inflammatory process. Just in case you wanted to know that. Here are other fun facts about this:

PCP doesn’t think this explains the pain.

I think it might.

There’s nothing, not a goddamned thing, to be done about it.

PCP wants to now go through the whole process again, but with my neck.

But there’d be nothing to be done about it.

And it would cost me the other half of those boots up there.

When will I learn? This time? This is how it is always going to work:

Something hurts.

It hurts all the goddamned time.

I have to modify my life.

IT DOESN’T MATTER IN THE SLIGHTEST THAT WE FIND OUT EXACTLY WHY.

The answer is always this: I have EDS, and I will never feel good again. The end.

Oh my, yes, that is a negative outlook, I agree. But it’s also true. The other thing is, why do I feel like it’s more legit if I know the exact why? Part of me was wanting a torn rotator cuff even though that would be career-ending. OH. That’s why–I am looking for what I feel will be a legit enough reason to leave my job. Thing is, I already have a legit reason, because I have EDS, but I want an iron-clad out, not a soft, hard-to-explain, I-don’t-look-sick reason. I want something that is so clear that I don’t even have to admit to myself that I might be leaving simply because I work with one of the most impossible people in the world and I am starting to give up on the idea that I can win,and also, I am tired of this person taking so much of my energy when right now, I have trouble carrying my own belongings into work each day.

I can hardly carry my own shit, and once I manage to get inside with it all and put it down, I spend the rest of my day with a micro-managing tyrant with the tact and professionalism of an angry rhinoceros. I expend HUGE amounts of energy trying to buffer this person, in whose hands my leash was placed (after FIVE YEARS of working to get it out of their grip) by the new Department Chair, who has no idea what sort of monster he created. The rest of us do, because we all admired how hard it was to get myself off the leash in the first place and that the monster had finally been shrunk down just a bit.

We talked a lot, the spouse and I, about whether or not I can or should keep working. Let’s face it; this person is not worth what I am spending on them, and, despite the money and time and Dr Googling, my shoulder still hurts. And it’s not going to get better, any more than my hands, or my back, or my neck, or my ankles, or my wrists. Will I choose to remain trapped in the rough waters of this medical system? Or will I decide to liberate myself from it, from angry rhinos, and from feeling like I should hang on just a little longer? I don’t know yet, but the trend is going in the Give Up direction.

I woke at 2:30 am, broke out in a sweat, and started panicking. It’s been an hour and half, and the panic party is still going strong, despite listening to some bilateral stimulation, repeating the word “okay” over and over again in my head, and silently reciting the alphabet over and over. Sometimes, those things distract me, but not this morning. Instead I am reviewing, over and over again, the fact that I got a little too drunk at dinner and may have slurred some words and been sloppy.

You would think I faced the electric chair, honestly, instead of maybe having had a little too much booze. Except, I really didn’t have any more than I normally have (less, actually) so what the hell happened? We had two margaritas in the late afternoon, something that is a bit of a weekend tradition. Then we met friends for dinner and split a bottle of wine between the two of us. Saving discussion of my tolerance and general habits, that’s not the usual level of consumption. Of course, alcohol is a favorite switch with which to whip myself in the morning, any morning, not just mornings that insist on starting at 2:30 am. I feel a little like I did the time I got all the mosquito bites and ended up slurring and spinning after three glasses of wine, and we *were* outside and the mosquitoes *were* bad, but I coated myself in Off, and I’m not itching much.

But all of that is just looping around and around in my head and nothing is stopping it. “You’ve made an ass of yourself” my brain insists, “You don’t remember the rest of the evening very clearly, you are a stupid, embarrassing person.” No, I tell my brain, no, this was not a cardinal sin, even if I did slur or stumble or not remember going to bed and vaguely recalling maybe taking a shower to rinse off the chemical warfare. But my thoughts loop on and on. My brain also wants me to know that now that I am up, and have been for awhile, that the rest of the weekend is ruined and I have foolishly wasted the chance to rest.

“Why did you go out at all?” my brain queries, “You were exhausted already.” Oh, I thought, that is true. I *was* completely exhausted. I have been in tech all week, starting with last Sunday night. On Sunday, Monday, Tuesday, Thursday and Friday I was watching the show. I wasn’t home before 9:30 pm, and I wasn’t asleep before 11:00 pm, and the one night I had off (Wednesday) I spent part of the night with my good friend and associate, Gnawing Stomach. The alarm went off every morning except yesterday at 5:45 am and I was up by 6:00am. But instead of thinking, in a forgiving of myself sort of way that maybe I simply pushed myself too far, I’m beating myself for my foolishness. What if I embarrassed myself? What kind of a jerk am I to meet up with someone for dinner and drink too much? That never happens to me.

Which would be a good reason to not freak out, right? I am not the person you don’t want to go out with because I’ll get all sloppy drunk and become slurred and overly sincere, so surely I have a free pass or two that are labelled “You Too Are Human.” My brain does not accept free passes, apparently. I am firmly, specifically, not allowed. I mean, what if I was a cute little drunk last night and did no harm? Could I let myself off the hook then? What if my immune system did flare and process things weirdly and so I lost some control? Why is it wrong to have an excuse?

In my whirling thoughts sort of way, I am obsessed with reconstructing the massacre. I did not have a good day pain-wise. My hands, thumbs, back, shoulder and hip were displeased with me. I did what I could to push it aside, because I had things I wanted to do. Even as I was happy to finally have a “day off”, I spent the better part of the day rendering for the show I’m designing this semester–which means I didn’t take the day off after all. Not that I hate spending a day drawing, but it was purely work-related, not something I was doing for myself. I didn’t finish the next page in the coloring book, I rendered a character’s costumes in full color and two views.

And here I sit, at nearly 4:30 am, nervous and wired and guilty. I have noted that I texted my friend and apologized for being drunk, and she said she likes me in any state including intoxicated. But I don’t feel better, oh no, that is expressly not allowed. Why does my brain sabotage me in this way? I don’t know. I’m also obsessing about the things I have to do today; like visiting my friend with brain damage and stopping by my mother’s house to look at tile samples. I could let both of those things go, but I won’t because I don’t feel I have a valid excuse. Then there’s the grocery store, meal planning, laundry….and then it’ll be back to work, tired and worn out instead of rested.

It seems that coping with this chronic, permanent, degenerative condition is constantly forcing me to re-evaluate my life and accept limitations. I don’t like it, I’m not happy, but clearly I’m doing something wrong or I’d be sleeping right now instead of splashing in a puddle of anxiety. At least, that’s what I imagine I’d be doing.

This summer is the gift that keeps on giving. I had my teeth cleaned yesterday; an activity I despise anyway, but which has become harder due to EDS. My hygienist murmured that she didn’t remember what we did last time but if we needed breaks we could take them. She started to torture me and I politely raised a finger. She stopped.”You gave me bite blocks last time.” Oh, she says, she must not have written that down. Except then she looked at my chart and she *had* written it down. My tolerance for any issues right now is well below zero. In the time she was saying she didn’t remember, she could’ve been looking at my chart. I am a font of magical ideas, man.

My dentist came in at the end and asked about my jaw, which I reported is making a sort of scraping sound when I open it. He said this was the joint rubbing against the bone and if I developed a lot of pain or found I was losing function to make an appointment. Then he said, “I’ve been researching Ehler’s Danlos and wow, that’s an interesting malady. Do you also have Sjogren’s? That’s pretty common in patients with what you have.” I said I had wondered, as for about the last six months or more, I wake up in the middle of the night because my mouth is so dry I can’t swallow. “Yeah,” he said, “You probably do. We’ll start you on a high flouride toothpaste that you’ll brush with at night and then don’t rinse your mouth.”

So naturally I trot home and take a hard look at Sjogren’s Syndrome and surprise! I’m pretty sure I can add it to my collection of EDS co-morbidities. I also looked up how to pronounce it, since the word itself offers few clues. It’s “Shoe-grens”. You’re welcome. There is a similar issue with Ehler’s Danlos, is it Aylers, Eh-lers or Eee-lers? I say “Eh” lers, which is probably wrong but I’ve heard every variation.

ANYWAY, Sjogren’s is an auto immune disorder wherein a person’s immune system has a meeting of the war council and pledges to attack the moisture producing glands related to mucousal membranes. So, dry mouth, dry eyes, dry nose, dry lady bits (giving new meaning to the treasured insult, “dried up old cunt.”). My mouth is terribly dry, which I had been thinking was pretty odd, given that I come from (and had been a member of) a pretty juicy family. My nose is also dry, and often I get cracks in there that make even the slightest magical gesture very painful. My eye doctor mentioned that my eyes were mild-moderately dry.

Sjogren’s is typically diagnosed and managed by a rheumatologist. You know, like the one I can’t see in Albuquerque. My options at this point are as follows:

Do absolutely not a goddamned thing about it.

Keep the appointment in Albuquerque and pay out of pocket.

Text my PCP and ask him to call my sort-of former Rheumatologist here and see if he can smooth things over so I can crawl back to that guy and get his opinion on diagnosing the Sjogren’s (for which there is not a definitive test, rather, a collection of evidence that points in a direction, but only sort of).

I keep telling the Universe that I have more than I can handle on my plate, yet the universe seems to be an old cafeteria lady who is hard of hearing and keeps giving me another scoop of lukewarm mystery meat with gravy.